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Testimony Before the President's Council on Bioethics: Protecting Patients' Rights

Lois Uttley's picture

Editor's Note: The following is excerpted from written testimony submitted by Lois Uttley, director of the MergerWatch Project, to the President's Council on Bioethics, which is meeting Thursday and Friday of this week. Lois's testimony concerns the harmful implications of proposed Dept. of Health and Human Services regulations regarding provider conscience, and puts forward alternative regulations that would protect patients' conscience and access to care.

Recently, a great deal of public attention and public policy has been focused on protecting the religious and ethical beliefs of health providers. As your council discusses this issue, I urge you to consider another imperative - protecting the rights of patients to receive accurate medical information and needed treatment in a timely manner. In a pluralistic society such as we have in the United States, public policy must carefully balance the needs and rights of all affected parties.

Let's use an example to make this discussion very concrete:

A 19-year-old rape victim - let's call her Sally -- is brought to a hospital emergency department by the police. The physician who treats her numerous injuries - Let's call him Dr. Brown -- omits any mention of the potential to prevent pregnancy from the rape by using emergency contraception, because he does not approve of it for religious reasons. Many hours later, Sally leaves the hospital without being informed about emergency contraception, or offered the medication. A friend takes her back to the college dorm where they live and Sally, exhausted, falls asleep for 24 hours. Because emergency contraception is the most effective when taken shortly after unprotected intercourse, Sally's opportunity to prevent pregnancy has now been greatly diminished.

 

What has just happened? Is this proper medical care? What are Sally's rights? What are Dr. Brown's? And, how should they be properly balanced? 

The patient's rights

Let's start with Sally. After all, the patient is supposed to be the focus of what the health professions now refer to as "patient-centered care." According to the Institute of Medicine, "patient-centered care is defined as health care that establishes a partnership among practitioners, patients and their families (when appropriate) to ensure that decisions respect patients' wants, needs and preferences and solicit patients' input on the education and support they need to make decisions and participate in their own care."

One of the central tenets of patients' rights and "patient-centered care" is the right to informed consent. For a patient to make an informed decision about medical treatment, he or she must have knowledge of all potential treatment options, and their risks and benefits. In this case, the rape victim has not been informed about an important potential treatment option - use of emergency contraception to prevent pregnancy. As it happens, Sally is one of the millions of American women of reproductive age who are not aware of EC. So, Sally has had no opportunity to consider this option or use her own moral, ethical or religious perspectives to decide whether she wishes to risk the chance of bearing the child of a rapist. Further, she has had no chance to discuss with her physician the potential medical complications of an unplanned pregnancy, in view of her existing medical conditions, which include diabetes.

How could this violation of patients' rights be corrected? The simplest method would be to require all hospital emergency department personnel, including Dr. Brown, to always offer EC to rape victims who are of reproductive age.

Physicians' rights and responsibilities

But now, let's focus on Dr. Brown. A fundamentalist Christian, he believes that emergency contraception is the same thing as abortion, even though medical and scientific experts say that is untrue and the FDA has stated unequivocally that emergency contraception prevents pregnancy and does not cause an abortion.

Dr. Brown argues that requiring him to give emergency contraception to Sally would violate his religious beliefs. "I shouldn't have to give up my religious freedom in order to be a doctor," he says.

Let's pause for a moment to consider whether personal beliefs that are unsupported by or unrelated to medical science should be considered valid reasons why a licensed medical professional should be permitted to refuse to provide needed medical care, especially in an emergency situation in a facility that serves the general public. How far should we allow Dr. Brown or one of his colleagues to go with such claims? If Dr. Brown also believes that AIDS is a just punishment from God for perverted behavior, should he be allowed to refuse to treat any patients with AIDS? What if one of his colleagues believes that under Islamic law, anyone who committed murder should be sentenced to death? Should he be permitted to refuse to treat suspected murderers who are brought to the emergency room for treatment of wounds suffered in the attack? Where would we draw the line between acceptable and unacceptable moral reasons for refusing to provide care?

In the interests of moving our analysis along, however, let's set that issue aside and see if there is a compromise we could arrive at that would permit Dr. Brown to refuse to give EC to Sally, while still ensuring that she gets the medication in a timely manner. What if we just require Dr. Brown to refer Sally to another physician or a nurse in the emergency department who could inform her about EC and provide her the medication if she wishes to use it?

That, too, is unacceptable, Dr. Brown says, because it requires him to cooperate in helping the patient receive treatment he finds morally objectionable. "I cannot be implicated in any way in helping her commit an immoral act," he states.

One could argue that Dr. Brown's professional responsibilities to his patient should obligate him to provide Sally with at least a referral in such a situation. But, under a proposed "Provider Conscience Regulation" issued by the U.S. Department of Health and Human Services (HHS) on August 26, 2008, no entity receiving federal funding (such as the hospital where Dr. Brown works) could require him to give Sally the medical information or referral she needs if he claims a religious objection. To attempt do so would be to "discriminate" against him, and could result in the loss of federal funding, according to the rule. Not a single other physician or nurse in the hospital could be required to step in and give Sally what she needs, if that health professional held the same views as Dr. Brown.

Moreover, HHS has proposed a very expansive definition of the term "assist in the performance of" to permit refusals for "participation in any activity with a reasonable connection to the objectionable procedure, including referrals, training and other arrangements for offending procedures." Arguably, this definition would permit a pharmacy technician to refuse to stock emergency contraception in the hospital pharmacy, or a hospital purchasing agent to refuse to order it. Again, we face the question of where we should draw the line between acceptable and unacceptable refusals. The proposed HHS rule would seem to draw no line at all, instead allowing medical professionals and hospital personnel to use personal moral or religious beliefs to exempt themselves from any medical obligations to their patients.

Let's consider another alternative - requiring the hospital to be responsible for ensuring that Sally's rights as a patient are protected.

Hospital responsibilities

Arguably, the hospital should already be responsible for ensuring that Sally's medical needs are met. In order to participate in the federal Medicare program, and to be reimbursed under the Medicaid program, hospitals must adhere to "Conditions of Participation." These conditions are meant to ensure that patients' rights are respected and they received medically appropriate care. For example, hospitals are required to:

  • "Honor a patient's right to make informed decisions regarding his or her medical care."
  • "Meet the emergency needs of patients in accordance with acceptable standards of practice."
  • "Have pharmaceutical services that meet the needs of patients."

 

But since the Medicaid/Medicare Conditions of Participation has not yet been enforced to require the provision of EC to rape victims, a number of states have enacted so-called EC in the ER or Compassionate Care for Rape Victims laws. These statutes specifically require hospitals to offer emergency contraception to rape victims, or, at minimum, inform rape victims about the potential to use the medication to prevent pregnancy.

How should the hospital go about fulfilling these responsibilities for patients like Sally? Should administrators fire Dr. Brown and replace him with someone who will dispense EC to rape victims? No, that would not be the preferable way of dealing with this situation, because there are far less drastic options available.

Instead, the hospital could offer Dr. Brown a transfer out of the ER into another unit of the hospital where he would not be expected to dispense EC, and replace him in the ER with someone who has no objections to EC. Such an arrangement would be an example of a "reasonable accommodation" under Title VII of the Civil Rights Act of 1964, which requires employers to reasonably accommodate an employee's religious beliefs or practices, unless doing so places an "undue hardship" on the employer's business. This type of careful balancing of competing rights is a hallmark of American public policy.

But, Dr. Brown might argue that he is being discriminated against even by such a reasonable accommodation, because it removes him from the practice of emergency medicine, which he sees as his mission in life. The proposed HHS rule might give him ammunition to do so, because it lacks any attempt to balance his rights with the patients' rights and the obligation of the hospital to serve its patients.


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2 comments
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The proposed rule states that it is to apply to "individuals and entities with moral objections to abortion and other medical procedures."

There are an infinite number of "other medical procedures" one could claim offended one's conscience, in addition to refusing EC and appropriate counseling for rape victims. There is no burden to declare in advance what any given doctor may find objectionable, the proposed rule states explicitly that "The Department seeks to avoid judging whether a particular action is genuinely offensive to an individual."

What if a doctor refused to treat someone because they were gay or transgendered? Could Christian doctors refuse to treat atheists? Could feminist doctors refuse to treat pornographers? Will patients have to submit to questioning on their beliefs before they can be treated?

Submitted by Anonymous on September 12, 2008 - 10:39pm.

Is there evidence that there has been widespread discrimination against medical workers that are 'following their consciences'? Is there an epidemic of doctors being forced to perform abortions and sterilizations? What has really brought on this proposed rule?

Submitted by Anonymous on September 13, 2008 - 9:48am.